Re: valganciclovir/Dr. Montoya/Stanford study results

[Guest guest]

>

> http://mednews.stanford.edu/releases/2007/january/montoya.html

>

> New therapy for chronic fatigue syndrome to be tested at Stanford

>

> STANFORD, Calif. — A preliminary study suggests there may be hope in

the offing for

> some sufferers of chronic fatigue syndrome with a new therapy being

tested by

> researchers at the Stanford University School of Medicine.

Great news that the findings of the initial study have been

replicated. A little discouraging for me though as the onset of my

fatigue was not due to a viral infection as far as I can tell. But

great news for anyone who can be helped.

-chris

[Guest guest]

I just checked out the side effects of this drug; frightening! You are not

allowed to let it touch your skin or eyes!!! And (for AIDS sufferers), if you

miss " a " dose the virus can increase. I would not be in a hurry to try this one.

Adrienne

valganciclovir/Dr. Montoya/Stanford study results

http://mednews.stanford.edu/releases/2007/january/montoya.html

New therapy for chronic fatigue syndrome to be tested at Stanford

STANFORD, Calif. - A preliminary study suggests there may be hope in the

offing for

some sufferers of chronic fatigue syndrome with a new therapy being tested by

researchers at the Stanford University School of Medicine.

José Montoya, MD, associate professor of medicine (infectious diseases), and

postdoctoral

scholar s Kogelnik, MD, PhD, have used the drug valganciclovir - an

antiviral often

used in treating diseases caused by human herpes viruses - to treat a small

number of

CFS patients.

The researchers said they treated 25 patients during the last three years, 21

of whom

responded with significant improvement that was sustained even after going off

the

medication at the end of the treatment regimen, which usually lasts six

months. The first

patient has now been off the drug for almost three years and has had no

relapses. A paper

describing the first dozen patients Montoya and Kogelnik treated with the drug

was

published in the December issue of Journal of Clinical Virology.

" This study is small and preliminary, but potentially very important, " said

Komaroff, MD, professor of medicine at Harvard Medical School, who was not

involved in

the study. " If a randomized trial confirmed the value of this therapy for

patients like the

ones studied here, it would be an important landmark in the treatment of this

illness. "

Montoya has received a $1.3 million grant from Roche Pharmaceutical, which

manufactures the drug under the brand name Valcyte, to conduct a randomized,

placebo-

controlled, double-blind study set to begin this quarter at Stanford. The

study will assess

the effectiveness of the drug in treating a subset of CFS patients.

Montoya is speaking about his efforts at the biannual meeting of the

International

Association for Chronic Fatigue Syndrome in Fort Lauderdale on Jan. 11 and 12.

Chronic fatigue syndrome has baffled doctors and researchers for decades,

because aside

from debilitating fatigue, it lacks consistent symptoms. Although many

genetic, infectious,

psychiatric and environmental factors have been proposed as possible causes,

none has

been nailed down. It was often derided as " yuppie flu, " since it seemed to

occur frequently

in young professionals, though the Centers for Disease Control and Prevention

says it's

most common in the middle-aged. But to those suffering from it, CFS is all too

real and its

effects are devastating, reducing once-vigorous individuals to the ranks of

the bedridden,

with an all-encompassing, painful and sleep-depriving fatigue.

More than 1 million Americans suffer from the disorder, according to the CDC.

The

disease often begins with what appears to be routine flulike symptoms, but

then fails to

subside completely - resulting in chronic, waxing and waning debilitation for

years.

Valganciclovir is normally used against diseases caused by viruses in the

herpes family,

including cytomegalovirus, Epstein-Barr virus and human herpes virus-6. These

diseases

usually affect patients whose immune systems are severely weakened, such as

transplant

and cancer patients. Montoya, who had used the drug in treating such patients

for years,

decided to try using it on a CFS patient who came to him in early 2004 with

extremely high

levels of antibodies for three of the herpes family viruses in her blood. At

the time, she

had been suffering from CFS for five years.

When a virus infects someone, the levels of antibodies cranked out by the

immune system

in response typically increase until the virus is overcome, then slowly

diminish over time.

But Montoya's patient had persistently high antibodies for the three viruses.

In addition,

the lymph nodes in her neck were significantly enlarged, some up to eight

times their

normal size, suggesting her immune system was fighting some kind of infection,

even

though a comprehensive evaluation had failed to point to any infectious cause.

Concerned about the unusual elevations in antibody levels as well as the

swelling of her

lymph nodes, Montoya decided to prescribe valganciclovir. " I thought by giving

an antiviral

that was effective againstherpes viruses for a relatively long period of time,

perhaps we

could impact somehow the inflammation that she had in her lymph nodes, " said

Montoya.

Within four weeks, the patient's lymph nodes began shrinking. Six weeks later

she phoned

Montoya from her home in South America, describing how she was now exercising,

bicycling and going back to work at the company she ran before her illness.

" We were

really shocked by this, " recalled Montoya.

Of the two dozen patients Montoya and Kogelnik have since treated, the 20 that

responded all had developed CFS after an initial flulike illness, while the

non-responders

had suffered no initial flu.

Some of the patients take the drug for more than six months, such as

Manson,

whose battle with CFS has lasted more than 18 years. The former triathlete was

stricken

with a viral infection a year after his marriage. After trying unsuccessfully

to overcome

what he thought were lingering effects of the flu, he had no choice but to

drastically curtail

all his activities and eventually stop working.

During his longest period of extreme fatigue, 13½ weeks, Manson said, " My wife

literally

thought I was passing away. I could hear the emotion in her voice as she tried

to wake me,

but I couldn't wake up to console her. That was just maddening. "

Now in his seventh month of treatment, Manson is able to go backpacking with

his

children with no ill after-effects. Prior to starting the treatment, Manson's

three children,

ages 9 to 14, had never seen him healthy.

Montoya and Kogelnik emphasized that even if their new clinical trial

validates the use of

valganciclovir in treating some CFS patients, the drug may not be effective in

all cases. In

fact, the trial will assess the effectiveness of the medication among a

specific subset of

CFS patients; namely, those who have viral-induced dysfunction of the central

nervous

system.

" This could be a solution for a subset of patients, but that subset could be

quite large, "

said Loomis, executive director of the HHV-6 Foundation, which has

helped fund a

significant portion of the preparatory work for the clinical trial. " These

viruses have been

suspected in CFS for decades, but researchers couldn't prove it because they

are so

difficult to detect in the blood. If Montoya's results are confirmed, he will

have made a real

breakthrough. "

" What is desperately needed is the completion of the randomized, double-blind,

placebo-

controlled clinical trial that we are about to embark on, " Montoya said.

People interested in participating in the clinical trial must live in the San

Francisco Bay

Area. More information about the clinical trial is available online at

http://www.vicd.info/

clinicaltrial.html.

# # #

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

I just started taking Famvir, an antiviral like the one described,

and I've seen unbelievable results in the past week. I've gone from

3 hours of functioning per day to 8 hours. You don't take it

forever, only a few months. It's been a god-send for me so far, so I

hope that everyone doesn't dismiss it out of hand. Now, I do have

positive Epstein Barr, but I had it in highschool and I'm now 34. I

just developed chronic fatigue suddenly in April when I returned to

work too soon from getting over pneumonia. --

>

> I just checked out the side effects of this drug; frightening! You

are not allowed to let it touch your skin or eyes!!! And (for AIDS

sufferers), if you miss " a " dose the virus can increase. I would not

be in a hurry to try this one.

> Adrienne

> valganciclovir/Dr. Montoya/Stanford

study results

>

>

> http://mednews.stanford.edu/releases/2007/january/montoya.html

>

> New therapy for chronic fatigue syndrome to be tested at Stanford

>

> STANFORD, Calif. - A preliminary study suggests there may be

hope in the offing for

> some sufferers of chronic fatigue syndrome with a new therapy

being tested by

> researchers at the Stanford University School of Medicine.

>

> José Montoya, MD, associate professor of medicine (infectious

diseases), and postdoctoral

> scholar s Kogelnik, MD, PhD, have used the drug

valganciclovir - an antiviral often

> used in treating diseases caused by human herpes viruses - to

treat a small number of

> CFS patients.

>

> The researchers said they treated 25 patients during the last

three years, 21 of whom

> responded with significant improvement that was sustained even

after going off the

> medication at the end of the treatment regimen, which usually

lasts six months. The first

> patient has now been off the drug for almost three years and has

had no relapses. A paper

> describing the first dozen patients Montoya and Kogelnik treated

with the drug was

> published in the December issue of Journal of Clinical Virology.

>

> " This study is small and preliminary, but potentially very

important, " said

> Komaroff, MD, professor of medicine at Harvard Medical School,

who was not involved in

> the study. " If a randomized trial confirmed the value of this

therapy for patients like the

> ones studied here, it would be an important landmark in the

treatment of this illness. "

>

> Montoya has received a $1.3 million grant from Roche

Pharmaceutical, which

> manufactures the drug under the brand name Valcyte, to conduct a

randomized, placebo-

> controlled, double-blind study set to begin this quarter at

Stanford. The study will assess

> the effectiveness of the drug in treating a subset of CFS

patients.

>

> Montoya is speaking about his efforts at the biannual meeting of

the International

> Association for Chronic Fatigue Syndrome in Fort Lauderdale on

Jan. 11 and 12.

>

> Chronic fatigue syndrome has baffled doctors and researchers for

decades, because aside

> from debilitating fatigue, it lacks consistent symptoms.

Although many genetic, infectious,

> psychiatric and environmental factors have been proposed as

possible causes, none has

> been nailed down. It was often derided as " yuppie flu, " since it

seemed to occur frequently

> in young professionals, though the Centers for Disease Control

and Prevention says it's

> most common in the middle-aged. But to those suffering from it,

CFS is all too real and its

> effects are devastating, reducing once-vigorous individuals to

the ranks of the bedridden,

> with an all-encompassing, painful and sleep-depriving fatigue.

>

> More than 1 million Americans suffer from the disorder,

according to the CDC. The

> disease often begins with what appears to be routine flulike

symptoms, but then fails to

> subside completely - resulting in chronic, waxing and waning

debilitation for years.

>

> Valganciclovir is normally used against diseases caused by

viruses in the herpes family,

> including cytomegalovirus, Epstein-Barr virus and human herpes

virus-6. These diseases

> usually affect patients whose immune systems are severely

weakened, such as transplant

> and cancer patients. Montoya, who had used the drug in treating

such patients for years,

> decided to try using it on a CFS patient who came to him in

early 2004 with extremely high

> levels of antibodies for three of the herpes family viruses in

her blood. At the time, she

> had been suffering from CFS for five years.

>

> When a virus infects someone, the levels of antibodies cranked

out by the immune system

> in response typically increase until the virus is overcome, then

slowly diminish over time.

> But Montoya's patient had persistently high antibodies for the

three viruses. In addition,

> the lymph nodes in her neck were significantly enlarged, some up

to eight times their

> normal size, suggesting her immune system was fighting some kind

of infection, even

> though a comprehensive evaluation had failed to point to any

infectious cause.

>

> Concerned about the unusual elevations in antibody levels as

well as the swelling of her

> lymph nodes, Montoya decided to prescribe valganciclovir. " I

thought by giving an antiviral

> that was effective againstherpes viruses for a relatively long

period of time, perhaps we

> could impact somehow the inflammation that she had in her lymph

nodes, " said Montoya.

>

> Within four weeks, the patient's lymph nodes began shrinking.

Six weeks later she phoned

> Montoya from her home in South America, describing how she was

now exercising,

> bicycling and going back to work at the company she ran before

her illness. " We were

> really shocked by this, " recalled Montoya.

>

> Of the two dozen patients Montoya and Kogelnik have since

treated, the 20 that

> responded all had developed CFS after an initial flulike

illness, while the non-responders

> had suffered no initial flu.

>

> Some of the patients take the drug for more than six months,

such as Manson,

> whose battle with CFS has lasted more than 18 years. The former

triathlete was stricken

> with a viral infection a year after his marriage. After trying

unsuccessfully to overcome

> what he thought were lingering effects of the flu, he had no

choice but to drastically curtail

> all his activities and eventually stop working.

>

> During his longest period of extreme fatigue, 13½ weeks, Manson

said, " My wife literally

> thought I was passing away. I could hear the emotion in her

voice as she tried to wake me,

> but I couldn't wake up to console her. That was just maddening. "

>

> Now in his seventh month of treatment, Manson is able to go

backpacking with his

> children with no ill after-effects. Prior to starting the

treatment, Manson's three children,

> ages 9 to 14, had never seen him healthy.

>

> Montoya and Kogelnik emphasized that even if their new clinical

trial validates the use of

> valganciclovir in treating some CFS patients, the drug may not

be effective in all cases. In

> fact, the trial will assess the effectiveness of the medication

among a specific subset of

> CFS patients; namely, those who have viral-induced dysfunction

of the central nervous

> system.

>

> " This could be a solution for a subset of patients, but that

subset could be quite large, "

> said Loomis, executive director of the HHV-6 Foundation,

which has helped fund a

> significant portion of the preparatory work for the clinical

trial. " These viruses have been

> suspected in CFS for decades, but researchers couldn't prove it

because they are so

> difficult to detect in the blood. If Montoya's results are

confirmed, he will have made a real

> breakthrough. "

>

> " What is desperately needed is the completion of the randomized,

double-blind, placebo-

> controlled clinical trial that we are about to embark on, "

Montoya said.

>

> People interested in participating in the clinical trial must

live in the San Francisco Bay

> Area. More information about the clinical trial is available

online at http://www.vicd.info/

> clinicaltrial.html.

>

> # # #

>

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

>

[Guest guest]

I took Famvir for years and it was very helpful. Most of my symptoms were viral

from EBV and CMV and HHV6 and who knows what else. I look at these things with

a grain of salt. Any " side effect " list can look just as bad. I recovered so

you can't argue it was causing me any permanent damage. , one thing that

CFS doctors agree on is that it's good to fight hard as soon as possible because

the longer you are sick the more messed up your body gets. The Famvir sounds

like it is very good for you and I wouldn't get scared off.

Doris

----- Original Message -----

I just started taking Famvir, an antiviral like the one described,

and I've seen unbelievable results in the past week. I've gone from

3 hours of functioning per day to 8 hours. You don't take it

forever, only a few months. It's been a god-send for me so far, so I

hope that everyone doesn't dismiss it out of hand. Now, I do have

positive Epstein Barr, but I had it in highschool and I'm now 34. I

just developed chronic fatigue suddenly in April when I returned to

work too soon from getting over pneumonia. --

>

> I just checked out the side effects of this drug; frightening! You

are not allowed to let it touch your skin or eyes!!! And (for AIDS

sufferers), if you miss " a " dose the virus can increase. I would not

be in a hurry to try this one.

> Adrienne

.

[Guest guest]

Keep us posted, please. We need good news, always, but we also need to learn of

side-effects and relapses if present.

Thanks,

Adrienne

valganciclovir/Dr. Montoya/Stanford

study results

>

>

> http://mednews.stanford.edu/releases/2007/january/montoya.html

>

> New therapy for chronic fatigue syndrome to be tested at Stanford

>

> STANFORD, Calif. - A preliminary study suggests there may be

hope in the offing for

> some sufferers of chronic fatigue syndrome with a new therapy

being tested by

> researchers at the Stanford University School of Medicine.

>

> José Montoya, MD, associate professor of medicine (infectious

diseases), and postdoctoral

> scholar s Kogelnik, MD, PhD, have used the drug

valganciclovir - an antiviral often

> used in treating diseases caused by human herpes viruses - to

treat a small number of

> CFS patients.

>

> The researchers said they treated 25 patients during the last

three years, 21 of whom

> responded with significant improvement that was sustained even

after going off the

> medication at the end of the treatment regimen, which usually

lasts six months. The first

> patient has now been off the drug for almost three years and has

had no relapses. A paper

> describing the first dozen patients Montoya and Kogelnik treated

with the drug was

> published in the December issue of Journal of Clinical Virology.

>

> " This study is small and preliminary, but potentially very

important, " said

> Komaroff, MD, professor of medicine at Harvard Medical School,

who was not involved in

> the study. " If a randomized trial confirmed the value of this

therapy for patients like the

> ones studied here, it would be an important landmark in the

treatment of this illness. "

>

> Montoya has received a $1.3 million grant from Roche

Pharmaceutical, which

> manufactures the drug under the brand name Valcyte, to conduct a

randomized, placebo-

> controlled, double-blind study set to begin this quarter at

Stanford. The study will assess

> the effectiveness of the drug in treating a subset of CFS

patients.

>

> Montoya is speaking about his efforts at the biannual meeting of

the International

> Association for Chronic Fatigue Syndrome in Fort Lauderdale on

Jan. 11 and 12.

>

> Chronic fatigue syndrome has baffled doctors and researchers for

decades, because aside

> from debilitating fatigue, it lacks consistent symptoms.

Although many genetic, infectious,

> psychiatric and environmental factors have been proposed as

possible causes, none has

> been nailed down. It was often derided as " yuppie flu, " since it

seemed to occur frequently

> in young professionals, though the Centers for Disease Control

and Prevention says it's

> most common in the middle-aged. But to those suffering from it,

CFS is all too real and its

> effects are devastating, reducing once-vigorous individuals to

the ranks of the bedridden,

> with an all-encompassing, painful and sleep-depriving fatigue.

>

> More than 1 million Americans suffer from the disorder,

according to the CDC. The

> disease often begins with what appears to be routine flulike

symptoms, but then fails to

> subside completely - resulting in chronic, waxing and waning

debilitation for years.

>

> Valganciclovir is normally used against diseases caused by

viruses in the herpes family,

> including cytomegalovirus, Epstein-Barr virus and human herpes

virus-6. These diseases

> usually affect patients whose immune systems are severely

weakened, such as transplant

> and cancer patients. Montoya, who had used the drug in treating

such patients for years,

> decided to try using it on a CFS patient who came to him in

early 2004 with extremely high

> levels of antibodies for three of the herpes family viruses in

her blood. At the time, she

> had been suffering from CFS for five years.

>

> When a virus infects someone, the levels of antibodies cranked

out by the immune system

> in response typically increase until the virus is overcome, then

slowly diminish over time.

> But Montoya's patient had persistently high antibodies for the

three viruses. In addition,

> the lymph nodes in her neck were significantly enlarged, some up

to eight times their

> normal size, suggesting her immune system was fighting some kind

of infection, even

> though a comprehensive evaluation had failed to point to any

infectious cause.

>

> Concerned about the unusual elevations in antibody levels as

well as the swelling of her

> lymph nodes, Montoya decided to prescribe valganciclovir. " I

thought by giving an antiviral

> that was effective againstherpes viruses for a relatively long

period of time, perhaps we

> could impact somehow the inflammation that she had in her lymph

nodes, " said Montoya.

>

> Within four weeks, the patient's lymph nodes began shrinking.

Six weeks later she phoned

> Montoya from her home in South America, describing how she was

now exercising,

> bicycling and going back to work at the company she ran before

her illness. " We were

> really shocked by this, " recalled Montoya.

>

> Of the two dozen patients Montoya and Kogelnik have since

treated, the 20 that

> responded all had developed CFS after an initial flulike

illness, while the non-responders

> had suffered no initial flu.

>

> Some of the patients take the drug for more than six months,

such as Manson,

> whose battle with CFS has lasted more than 18 years. The former

triathlete was stricken

> with a viral infection a year after his marriage. After trying

unsuccessfully to overcome

> what he thought were lingering effects of the flu, he had no

choice but to drastically curtail

> all his activities and eventually stop working.

>

> During his longest period of extreme fatigue, 13½ weeks, Manson

said, " My wife literally

> thought I was passing away. I could hear the emotion in her

voice as she tried to wake me,

> but I couldn't wake up to console her. That was just maddening. "

>

> Now in his seventh month of treatment, Manson is able to go

backpacking with his

> children with no ill after-effects. Prior to starting the

treatment, Manson's three children,

> ages 9 to 14, had never seen him healthy.

>

> Montoya and Kogelnik emphasized that even if their new clinical

trial validates the use of

> valganciclovir in treating some CFS patients, the drug may not

be effective in all cases. In

> fact, the trial will assess the effectiveness of the medication

among a specific subset of

> CFS patients; namely, those who have viral-induced dysfunction

of the central nervous

> system.

>

> " This could be a solution for a subset of patients, but that

subset could be quite large, "

> said Loomis, executive director of the HHV-6 Foundation,

which has helped fund a

> significant portion of the preparatory work for the clinical

trial. " These viruses have been

> suspected in CFS for decades, but researchers couldn't prove it

because they are so

> difficult to detect in the blood. If Montoya's results are

confirmed, he will have made a real

> breakthrough. "

>

> " What is desperately needed is the completion of the randomized,

double-blind, placebo-

> controlled clinical trial that we are about to embark on, "

Montoya said.

>

> People interested in participating in the clinical trial must

live in the San Francisco Bay

> Area. More information about the clinical trial is available

online at http://www.vicd.info/

> clinicaltrial.html.

>

> # # #

>

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

>

[Guest guest]

I agree, Doris, that side effects lists are generally bad, but some are worse

than others. I am not trying to scare anybody, just saying if I can't safely

touch it, THAT is pretty scary to me.

HAve I forgotten that you told us you are entirely recovered?

Adrienne

Re: Re: valganciclovir/Dr. Montoya/Stanford study

results

I took Famvir for years and it was very helpful. Most of my symptoms were

viral from EBV and CMV and HHV6 and who knows what else. I look at these things

with a grain of salt. Any " side effect " list can look just as bad. I recovered

so you can't argue it was causing me any permanent damage. , one thing

that CFS doctors agree on is that it's good to fight hard as soon as possible

because the longer you are sick the more messed up your body gets. The Famvir

sounds like it is very good for you and I wouldn't get scared off.

Doris

----- Original Message -----

I just started taking Famvir, an antiviral like the one described,

and I've seen unbelievable results in the past week. I've gone from

3 hours of functioning per day to 8 hours. You don't take it

forever, only a few months. It's been a god-send for me so far, so I

hope that everyone doesn't dismiss it out of hand. Now, I do have

positive Epstein Barr, but I had it in highschool and I'm now 34. I

just developed chronic fatigue suddenly in April when I returned to

work too soon from getting over pneumonia. --

>

> I just checked out the side effects of this drug; frightening! You

are not allowed to let it touch your skin or eyes!!! And (for AIDS

sufferers), if you miss " a " dose the virus can increase. I would not

be in a hurry to try this one.

> Adrienne

.

[Guest guest]

Doris,

Didn't you also take antibiotics? Would you say you got more help

from Famvir or antibiotics?

Thanks,

a Carnes

>

> I took Famvir for years and it was very helpful. Most of my

symptoms were viral from EBV and CMV and HHV6 and who knows what

else. I look at these things with a grain of salt. Any " side

effect " list can look just as bad. I recovered so you can't argue it

was causing me any permanent damage. , one thing that CFS

doctors agree on is that it's good to fight hard as soon as possible

because the longer you are sick the more messed up your body gets.

The Famvir sounds like it is very good for you and I wouldn't get

scared off.

>

> Doris

>

>

> ----- Original Message -----

>

>

> I just started taking Famvir, an antiviral like the one

described,

> and I've seen unbelievable results in the past week. I've gone

from

> 3 hours of functioning per day to 8 hours. You don't take it

> forever, only a few months. It's been a god-send for me so far,

so I

> hope that everyone doesn't dismiss it out of hand. Now, I do have

> positive Epstein Barr, but I had it in highschool and I'm now 34.

I

> just developed chronic fatigue suddenly in April when I returned

to

> work too soon from getting over pneumonia. --

>

>

> >

> > I just checked out the side effects of this drug; frightening!

You

> are not allowed to let it touch your skin or eyes!!! And (for

AIDS

> sufferers), if you miss " a " dose the virus can increase. I would

not

> be in a hurry to try this one.

> > Adrienne

>

> .

>

>

>

[Guest guest]

Hi All,

This is very interesting. Does this imply that by eliminating the

virus (whatever it is) that the mitochondrial/heart

problems/glutathione/methylation problems are all corrected and

therefore are all caused directly or indirectly by the virus?

It is really great if at least some people are being helped with this

treatment, I am just wanting to understand where all the mito/heart/

methylation stuff might fit in with it all and how they are getting

so much better without addressing these issues as well even after the

virus is killed off you might have thought that these problems might

persist at least to some degree.But perhaps by taking the load off

these systems (mitos/heart/methylation) they will naturally correct

themselves even if you do have SNP's in the methylation cycle etc But

what about heavy metals, perhaps as the methylation improves the body

can get rid of those too relatively easily?

I think Hall posted some while back of lipoceutical GSH being

successful in killing HHV6A so would you get the same benefits do you

think from taking that over several months as these people are from

taking this drug?

BW,

Sheila

>

> http://mednews.stanford.edu/releases/2007/january/montoya.html

>

> New therapy for chronic fatigue syndrome to be tested at Stanford

>

> STANFORD, Calif. — A preliminary study suggests there may be hope

in the offing for

> some sufferers of chronic fatigue syndrome with a new therapy being

tested by

> researchers at the Stanford University School of Medicine.

>

> José Montoya, MD, associate professor of medicine (infectious

diseases), and postdoctoral

> scholar s Kogelnik, MD, PhD, have used the drug

valganciclovir — an antiviral often

> used in treating diseases caused by human herpes viruses — to treat

a small number of

> CFS patients.

>

> The researchers said they treated 25 patients during the last three

years, 21 of whom

> responded with significant improvement that was sustained even

after going off the

> medication at the end of the treatment regimen, which usually lasts

six months. The first

> patient has now been off the drug for almost three years and has

had no relapses. A paper

> describing the first dozen patients Montoya and Kogelnik treated

with the drug was

> published in the December issue of Journal of Clinical Virology.

>

> " This study is small and preliminary, but potentially very

important, " said

> Komaroff, MD, professor of medicine at Harvard Medical School, who

was not involved in

> the study. " If a randomized trial confirmed the value of this

therapy for patients like the

> ones studied here, it would be an important landmark in the

treatment of this illness. "

>

> Montoya has received a $1.3 million grant from Roche

Pharmaceutical, which

> manufactures the drug under the brand name Valcyte, to conduct a

randomized, placebo-

> controlled, double-blind study set to begin this quarter at

Stanford. The study will assess

> the effectiveness of the drug in treating a subset of CFS patients.

>

> Montoya is speaking about his efforts at the biannual meeting of

the International

> Association for Chronic Fatigue Syndrome in Fort Lauderdale on Jan.

11 and 12.

>

> Chronic fatigue syndrome has baffled doctors and researchers for

decades, because aside

> from debilitating fatigue, it lacks consistent symptoms. Although

many genetic, infectious,

> psychiatric and environmental factors have been proposed as

possible causes, none has

> been nailed down. It was often derided as " yuppie flu, " since it

seemed to occur frequently

> in young professionals, though the Centers for Disease Control and

Prevention says it's

> most common in the middle-aged. But to those suffering from it, CFS

is all too real and its

> effects are devastating, reducing once-vigorous individuals to the

ranks of the bedridden,

> with an all-encompassing, painful and sleep-depriving fatigue.

>

> More than 1 million Americans suffer from the disorder, according

to the CDC. The

> disease often begins with what appears to be routine flulike

symptoms, but then fails to

> subside completely — resulting in chronic, waxing and waning

debilitation for years.

>

> Valganciclovir is normally used against diseases caused by viruses

in the herpes family,

> including cytomegalovirus, Epstein-Barr virus and human herpes

virus-6. These diseases

> usually affect patients whose immune systems are severely weakened,

such as transplant

> and cancer patients. Montoya, who had used the drug in treating

such patients for years,

> decided to try using it on a CFS patient who came to him in early

2004 with extremely high

> levels of antibodies for three of the herpes family viruses in her

blood. At the time, she

> had been suffering from CFS for five years.

>

> When a virus infects someone, the levels of antibodies cranked out

by the immune system

> in response typically increase until the virus is overcome, then

slowly diminish over time.

> But Montoya's patient had persistently high antibodies for the

three viruses. In addition,

> the lymph nodes in her neck were significantly enlarged, some up to

eight times their

> normal size, suggesting her immune system was fighting some kind of

infection, even

> though a comprehensive evaluation had failed to point to any

infectious cause.

>

> Concerned about the unusual elevations in antibody levels as well

as the swelling of her

> lymph nodes, Montoya decided to prescribe valganciclovir. " I

thought by giving an antiviral

> that was effective againstherpes viruses for a relatively long

period of time, perhaps we

> could impact somehow the inflammation that she had in her lymph

nodes, " said Montoya.

>

> Within four weeks, the patient's lymph nodes began shrinking. Six

weeks later she phoned

> Montoya from her home in South America, describing how she was now

exercising,

> bicycling and going back to work at the company she ran before her

illness. " We were

> really shocked by this, " recalled Montoya.

>

> Of the two dozen patients Montoya and Kogelnik have since treated,

the 20 that

> responded all had developed CFS after an initial flulike illness,

while the non-responders

> had suffered no initial flu.

>

> Some of the patients take the drug for more than six months, such

as Manson,

> whose battle with CFS has lasted more than 18 years. The former

triathlete was stricken

> with a viral infection a year after his marriage. After trying

unsuccessfully to overcome

> what he thought were lingering effects of the flu, he had no choice

but to drastically curtail

> all his activities and eventually stop working.

>

> During his longest period of extreme fatigue, 13½ weeks, Manson

said, " My wife literally

> thought I was passing away. I could hear the emotion in her voice

as she tried to wake me,

> but I couldn't wake up to console her. That was just maddening. "

>

> Now in his seventh month of treatment, Manson is able to go

backpacking with his

> children with no ill after-effects. Prior to starting the

treatment, Manson's three children,

> ages 9 to 14, had never seen him healthy.

>

> Montoya and Kogelnik emphasized that even if their new clinical

trial validates the use of

> valganciclovir in treating some CFS patients, the drug may not be

effective in all cases. In

> fact, the trial will assess the effectiveness of the medication

among a specific subset of

> CFS patients; namely, those who have viral-induced dysfunction of

the central nervous

> system.

>

> " This could be a solution for a subset of patients, but that subset

could be quite large, "

> said Loomis, executive director of the HHV-6 Foundation,

which has helped fund a

> significant portion of the preparatory work for the clinical

trial. " These viruses have been

> suspected in CFS for decades, but researchers couldn't prove it

because they are so

> difficult to detect in the blood. If Montoya's results are

confirmed, he will have made a real

> breakthrough. "

>

> " What is desperately needed is the completion of the randomized,

double-blind, placebo-

> controlled clinical trial that we are about to embark on, " Montoya

said.

>

> People interested in participating in the clinical trial must live

in the San Francisco Bay

> Area. More information about the clinical trial is available online

at http://www.vicd.info/

> clinicaltrial.html.

>

> # # #

>

[Guest guest]

Two things recently occured to me about this study. First of all,

isn't this Dr. Lerner's protocol that he has been using on patients

for 5 years or more? I thought he had a patent on the dx/treatment.

I was just reading a paper on Lerner's work from Oct. 2002, and it

looks like his research is finally being put through a formal

double blind study at Stanford???

Secondly, I wonder why Dr. Cheney is not focusing more along the lines

of a possible viral cause for a subset of patients? Especially

patients who show signs of chronic viral infection such as low

WBC count, which is done w/ a $20 blood test.

Mike C

>

> http://mednews.stanford.edu/releases/2007/january/montoya.html

>

> New therapy for chronic fatigue syndrome to be tested at Stanford

>

> STANFORD, Calif. — A preliminary study suggests there may be hope

in the offing for

> some sufferers of chronic fatigue syndrome with a new therapy being

tested by

> researchers at the Stanford University School of Medicine.

>

> José Montoya, MD, associate professor of medicine (infectious

diseases), and postdoctoral

> scholar s Kogelnik, MD, PhD, have used the drug

valganciclovir — an antiviral often

> used in treating diseases caused by human herpes viruses — to treat

a small number of

> CFS patients.

>

> The researchers said they treated 25 patients during the last three

years, 21 of whom

> responded with significant improvement that was sustained even

after going off the

> medication at the end of the treatment regimen, which usually lasts

<<snip>>

[Guest guest]

Mike and/or group,

Have they developed accurate reliable tests for HHV6, CMV or EBV yet?

How do you know that low WBC indicates a " chronic viral infection " ?

My WBC fluctuates from low to low/normal for years now.

thx,

Cheli

[Guest guest]

> Mike and/or group,

>

> Have they developed accurate reliable tests for HHV6, CMV or EBV

yet?

<<<Yes for EBV, not sure about HHV6 and CMV>>>>

> How do you know that low WBC indicates a " chronic viral infection " ?

> My WBC fluctuates from low to low/normal for years now.

<<<When my WBC count dropped from normal, 7.5, to 2.9 after my CFS

diagnosis, I started looking in to it. The Merck Manual states some-

where that low WBC count could indicate chronic viral infection. Of

course low WBC could be due to other things I suppose, but since

Roche is spending $1.2 million on a trial for Valcyte vs. 'CFS',

I would think that those of us w/ low WBC and CFS should be most

interested in the outcome.>>>

> thx,

>

> Cheli

>

[Guest guest]

Hi Cheli, here are 2 sites that have some info on testing.

http://www.hhv-6foundation.org/index.html

http://www.vicd.info/links.html

BW,

Sheila

>

> Mike and/or group,

>

> Have they developed accurate reliable tests for HHV6, CMV or EBV

yet?

>

> How do you know that low WBC indicates a " chronic viral infection " ?

> My WBC fluctuates from low to low/normal for years now.

>

> thx,

>

> Cheli

>

[Guest guest]

Ok, thanks.

the website says:

" Patients who are immunosuppressed and have a low IgG may show up with

low antibody levels in spite of active disease. If the IgG is low

normal or below normal, then the HHV-6 and EBV antibody test results

may also be suppressed. Similarly, some patients with very high IgG may

have high EBV and HHV-6 antibody levels that do not indicate active

disease. "

It appears that the Stanford group is using Focus Diagnostics as their

reference lab for their study AND the tests do need to be evaluated by

a knowledgeable physician- so I would be out of luck I guess if I did

this through my doctor.

Cheli

[Guest guest]

Famvir doesn't seem to have nearly the degree of negative side effects

that valganciclovir does. Also, if you look closely at the data,

many adverse reactions to Famvir were almost as high in the placebo

group. As a matter of fact, for people taking Famvir for Herpes

Zoster (shingles), abdominal pain was reported *3 times* more

frequently in the *placebo* group.

So side effects need to be taken in context, IMO. However, many folks

who are against prescription drugs will always point out the negative.

Mike C. (Info above from googling 'Famvir' from drugs.com site)

> >

> > I just checked out the side effects of this drug; frightening!

You

> are not allowed to let it touch your skin or eyes!!! And (for

AIDS

> sufferers), if you miss " a " dose the virus can increase. I would

not

> be in a hurry to try this one.

> > Adrienne

>

> .

>

>

>